Communicating a diagnosis of Dravet syndrome to parents/caregivers: An international Delphi consensus
Diagnosis of Dravet syndrome, a rare and severe form of childhood-onset epilepsy, is often challenging to give to parents. This international study developed guidance and recommendations to help healthcare professionals better structure and personalize this disclosure. By following this advice, doctors can provide more tailored support to families, improving their understanding and management of the condition.
Authors
- Delphine Breuillard (ORCID: https://orcid.org/0009-0000-6317-900X)
- Susanne Schubert‐Bast (ORCID: https://orcid.org/0000-0003-1545-7364)
- Francesca Darra (ORCID: https://orcid.org/0000-0002-1062-8438)
- Andreas Brunklaus (ORCID: https://orcid.org/0000-0002-7728-6903)
- Rocı́o Sánchez-Carpintero (ORCID: https://orcid.org/0000-0002-5058-0686)
- Andrea Giuffrida (ORCID: https://orcid.org/0000-0002-3773-0694)
- Claire Eldred (ORCID: https://orcid.org/0000-0001-8957-9044)
- Katherine C. Nickels (ORCID: https://orcid.org/0000-0002-6579-3035)
- Elena Cardenal‐Muñoz (ORCID: https://orcid.org/0000-0003-4757-9323)
- Silke Flege
Institutions
- Goethe University Frankfurt (DE)
- University of Verona (IT)
- Hôpital Necker-Enfants Malades (FR)
- Mayo Clinic (US)
- Royal Hospital for Children (GB)
- Assistance Publique – Hôpitaux de Paris (FR)
- Navarre Institute of Health Research (ES)
- Bambino Gesù Children's Hospital (IT)
- Clinica Universidad de Navarra (ES)
- Biocodex (France) (FR)
- University of Glasgow (GB)
Publication Details
- Journal
- Epilepsia Open
- Published
- 2025-02-01
- DOI
- https://doi.org/10.1002/epi4.13127
- Citations
- 3
- Primary Topic
- Delphi Technique in Research
- Type
- article
- Field-Weighted Citation Impact
- 12.60